Letters From Our Readers – Q&A Session 2/7/07

Q: I am seeing a trend in the independent attention given CFS over FM: The widespread publishing of genetic information found, specifically relating to CFS (and not FM) and the recent inclination to change the name of the illness can only be perceived that CFS is gaining legitimacy and that more money is being thrown into the coffers. I would like to understand why Fibromyalgia is lagging behind in public education research and support. As an individual with Fibromyalgia, I am saddened that there is still such public ignorance, where Chronic Fatigue Syndrome has made the headlines.

A:Largely because of the CDC’s campaign to raise awareness for CFS, it does seem like CFS is getting more press and media attention right now. However, for the past several years, FM has received more attention than CFS. A study of medical journals over the past five years shows that FM had an average of approximately 300 articles published per year, while CFS only averaged about 200 each year. So, as far as research goes, CFS is still lagging behind. Unfortunately both FM and CFS are still coming in far behind other illnesses. For example, in 2006 alone, there were around 800 articles on rheumatoid arthritis and 2,100 articles on lupus. Hopefully, as new research continues to prove there are very real physical abnormalities, and to give legitimacy to these illnesses, more researchers will be interested in studying both of them.

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Advice on Getting on Disability?

Q: I have scleroderma and spinal arthritis [as well as Fibromyalgia]. In some of the articles I read, I've noticed that some of the users are on disability. I was wondering how difficult it was to get on disability and if they have any advice. How can I learn all this info from your users?

Also - I enjoy receiving your newsletters. But I can't seem to get into your chat rooms….Whenever I try to create a user name, the system tells me that it's already being used therefore I can never enter to chat. - Jane

A:Going to ImmuneSupport.com and doing a search on “Social Security disability” will bring up a good selection of articles on how, when and why to file for disability. Here’s a good one to get you started: “Applying for Social Security Disability and SSI” by Drew L. Johnson, PC [ http://www.immunesupport.com/library/showarticle.cfm/id/7377/ ] To get other patients’ views on this or any other issue, go to the ImmuneSupport.com message board and look for the topic you’re interested in or start a new topic.

As for your user name question, It’s always surprising how many of us come up with the same ones. The best solution is usually to use a combination of letters and numbers. For example, the letters could be your initials, a pet’s name, etc. and the numbers could be your birthday or any other set of numbers you will remember.

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Irregular Body Temperatures with FM?

Q: I'm trying to find out if any of the fibro patients have irregular body temperatures and just how badly they are being affected by it. My doctor tells me that my body temp irregularity is not from the fibro yet I've been on various fibro sites and it shows that an irregular body temp is a fibro symptom.

A:Body temperature is regulated by the thyroid. A large number of FM patients also have hormone resistant hypothyroidism, which results in abnormally low basal body temperatures. Often this is overlooked because standard blood tests for thyroid only measure T4 levels, which may be within the normal range. Dr. John Lowe has done extensive studies on the link between FM and hypothyroidism. You can read more about his work at www.drlowe.com.

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Looking for Young People with FM

Q: I am 21 years old and I have been dealing with fibro for almost a year now. It is a horrible rollercoaster that I don't fully understand yet. I look forward to the newsletters every week and read them beginning to end. I appreciate the newsletters because none of my family or friends understand the pain and fatigue that we all endure. I was wondering if your website had any resources for young FMS patients. I don't know any younger people with fibro and I would love to get meet some! Thanks! – Lauren

A:If you’ll go to the ImmuneSupport.com message board
and search for young by title, you’ll find several posts by younger folks. You can reply to one of the existing topics or start your own. We’re sure they’ll be as happy to meet you as you will be to meet them!

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Are FM and RSD related?

Q: I was diagnosed with Fibromyalgia a few years ago and I am living with pain every day. Yesterday I watched TV and there was a young woman who had pain which started in her leg and then, after few months or years, spread to other parts of her body. She ended up in a wheelchair. Finally, she found a doctor who diagnosed her with Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS). After checking all the information on the computer I am now confused about my symptoms, because it's looks to me as if I have almost the same situation as that woman on TV. I wonder, is FM very different from RSD/CRPS? Or could people who have FM have RSD but they don't know about it? Does anyone know any connection between FM and RSD? It looks like it starts the same way after having accident or some pain for a while and then spreads to other parts in your body. I was diagnosed with FM, but after checking the symptoms of RSD, I think they match my symptoms better. I'm still confused and looking for answers. – Zofia

A:While FM and RSD/CRPS can both follow an accident or injury and cause a great deal of pain, there are several distinct differences. RSD/CRPS usually only affects an extremity, such as an arm or leg, while the pain of FM occurs in all four quadrants of the body. (It’s possible that someone with RSD/CRPS may also have FM, which would then cause all-over body pain.) Other distinct symptoms of RSD/CRPS include: n Changes in skin temperature: warmer or cooler compared to the opposite extremity. n Changes in skin texture and color: often blotchy, purple, pale, or red. n Increased hair and nail growth on the affected extremity. n Swelling of the affected area.

If you suspect you might have RSD/CRPS instead of or in addition to FM, it’s important that you talk to your doctor.

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Looking for FM Patients with Carcinoid Cancer

Q: I have had FM for many years…Now I have been diagnosed with carcinoid cancer. I had a small intestine resection as it was the primary and it had spread to the liver…The reason they found the cancer was my gall bladder was giving me fits and when the surgeon removed it he found the tumors on my liver. This type of cancer is very slow growing, thank goodness. My question is do you know of anyone else with FM has had carcinoid cancer? I would appreciate your help in this matter. – Cynthia

A: The best way to find out about FM patients who have had carcinoid cancer, a type of neuroendocrine tumor, is to go to the ImmuneSupport.com site, click on the community tab, then click on message boards. There, you can search on the word carcinoid in a message title, or in message content. In a cursory review we found at least one message about an FM patient with carcinoid. Your next step would be to post your question, or reply to one of the messages already there. If you haven’t joined the message board/chat rooms, it is free. When you click on an entry you’d like to read the first time, the site asks you to register by typing in a user name and password. Both can be the same for easy recall.
If you haven’t done this already, you can look for a carcinoid patient support group by going to the Carcinoid Cancer Foundation international support group page at [ http://www.carcinoid.org/support/index.shtml ] Scroll down. If you live in the U.S., for example, you can click on your state to see if there’s one in your area. Another listing is located at < http://www.carcinoid.us/ ] It might be that a question to one of these support groups would identify other FM patients you could exchange info with.